(Written on April 5th~ please forgive my procrastination in posting)
I love springtime! I always have. Spring brings the Easter bunny…and Little A’s birthday:-) Addison turned three on March 31st, and had great fun doing it. Our house is still under renovation, but we spent two days putting our kitchen back in order so that we could use it and the living room (where all of our kitchen stuff had been hiding in boxes) for Little A’s party.
This year’s cake–a strawberry drip cake with lemon filling–was not a big hit with the birthday girl. She took a swipe of frosting and a wee bite of cake, and wanted down to play. Thankfully the adults weren’t so picky and everyone had a slice. Some of us even had a cake truffle (or three!). Little A received lots of presents, but her favorites were a Princess Poppy doll and a Princess fort. She LOVES the movie Trolls, Princess Poppy in particular. We’ve watched that movie COUNTLESS times.
Little A’s eating habits continue to amaze~ she is eating almonds and pecans! Her feeding therapist says if she is eating these without issue than there isn’t anything she can’t eat:-) Yesterday Little A ate a 1/2 cup of broccoli cheddar soup and 1 cup of Annie’s organic mac-n-cheese with one hotdog cut up into tiny pieces! Then, at dinner, she ate several carrot and cucumber rounds dipped in homemade ranch dressing. The kid is hungry!!!
Her dad and I made the decision to stop her medicines a couple of weeks ago; we had been weaning her off of them, and had weaned her down from 3 times a day to once a day on her Bethanechol. Our house in under construction right now, and the painters were working upstairs; they had removed everything off of our bathroom counters and our closets and dumped them into the man cave; it was three days before I realized that Little A hadn’t had her Bethanechol or her Periactin…and she was fine!!! No vomiting, no unusual fussiness. So, we chose NOT to give it to her.
I contacted her GI doctor to let him know what we had decided, and his nurse called back and was not very happy (she advised me she would be documenting that we chose to discontinue meds without doctor consult.) I told her I planned to discuss with the doctor at Little A’s next visit in May, but that as long as she continued to do well we would not be continuing the medication. It’s now been 14 days since she had these medications, and she’s doing so very well. Best decision we’ve made in my opinion.
I have been worried about Little A’s development lately, so I ordered seven books from Amazon related to parenting children with Down syndrome. I am halfway through Down Syndrome Parenting 101: Must-Have Advice for Making Your Life Easier by Natalie Hale. I am SO GLAD to have found this book!!! It is an excellent resource of Hale’s experiences not only as a mother of a son with DS, but as a reading teacher of children and adults with DS. Throughout her book she lists recommendations for websites, books, learning applications for ipads and iphones, and so much more. I’ve already carted several of the books she recommends to help children with DS learn to read, and yesterday I downloaded two of her recommended apps to my iphone.
Because A is mostly nonverbal, we are not entirely sure how much of what we say is understood by her. I am hoping these will be a good starting place to encourage her learning…and maybe encourage her communication skills beyond growls and pats on he leg or arm for our attention.
The school’s diagnostician has changed the date and time of Little A’s evaluation three times now, and it is currently scheduled for April 10th at 12:30pm. If you are the praying kind, kindly pray for all of us that day. We’ll need it:-)
If there’s a particular book that was helpful to you in your Down syndrome journey, or a game or learning application that your child with DS loves, please share it in the comments. I’m always looking for ways for help and encourage Little A’s learning and development and I enjoy learning from fellow DS parents. Thank you for following our journey~~~~~